Hi Ladies, i just wondered if anyone else has had a reccurence whilst on maintenance avastin? I got scan results yesterday which have showed new tumours on my stomach wall 1.5/1cm and enlarged lymph nodes in my abdomen. I was due to continue avastin for another 9 months but they have now stopped it and advised chemotherapy again. This news has obviously deverstated me and made me think that my cancer is very aggressive, i knew it was stage 4 but i was hoping for a bit of a break whilst on the avastin. I was at stage 4 of sickness from work also and was about to have to make the decision about returning to work but this news has taken that decision for me! Stupid cancer. I would love to know if anyone has any similar experience? Thank in advance Ladies xxxx
Reccurence on avastin : Hi Ladies, i just... - My Ovacome
Reccurence on avastin
It’s always scary monsters when a new tumour pops up but that doesn’t mean it’s aggressive. Avastin for maintenance is ok if nothing changes, it’s absolutely the right thing to do to change the plan if there’s a reason. I had Avastin as a stand-alone treatment to try and buy me more time. I’ve no idea if that’s why I’m still here.
Do you know which cell type and grade you are? As that can dictate the chemical therapy they suggest. You could ask for a second opinion or what options there are and what each individual one offers you
A big hug and try not to over think it
LA xx
Hi again,
So sorry about your bad news.
It looks like a rise in your CA-125 is a good indicator for you, so that can help you in future.
I am experiencing my first recurrence, like many of us, after only 6 months, and I felt amazingly well before my Ca-125 gave the game away.
I have been on Carboplatin & Caelyx for this second line, going for my fifth infusion tomorrow.
So far, it has been pretty easy compared to first line, and it is totally destroying the cancer.
But I am kind of lucky, I think, being BRCA1 positive and having High Grade Serous, which is supposed to mean my cancer responds well to treatment.
I am hoping that when I get on Niraparib, after this, that I will remain cancer free.
So fingers crossed for all of us,
Hugs,
Laura
That's great Laura, I'm going to start the same treatment as you on 20th and I'm so greatful that i won't lose what bit of hair I've got growing back! And bless you for taking the time to reply xxx
Hi, again, Laura. I'm sorry to hear about first recurrence. I had mine one year ago. I took it harder than first diagnosis. I was resistant at first, but, I agreed to the PARP Zejula. I'm glad I did because it makes me feel I am proactively doing something to keep this effing beast away.
Wishing you breeze through your next couple of chemos and then exhale. I'm on the 100mg. Started on 200 mg but platelets dropped. However, everyone is different and tolerance levels vary. Wishing you the BEST! Please post when you are done with Chemo. Want to follow your recovery.
XOX
Marisa
Thanks, Marisa.
Do you live in New Haven?
That’s where my mother’s family comes from!
She and her brother graduated from Yale before World War 2.
Meanwhile , congratulations that you were able to get on Zejula, Niraparib.
I just saw my Oncologist today and will start on 200mgs sometime in May.
How long did you wait after your last infusion to start Zejula?
I have a weird condition that gives me lots of extra platelets, so maybe I will escape some of the problems others experience, although I did need 2 haemoglobin transfusions on first line...
Fingers crossed we both keep the wolf at bay.
Hugs,
Laura
Wow! They graduated from Yale! That's awesome and alot of smarts in your family!
We live in Westchester County, NY which is town right next to Greenwich, CT.
We have been boating on the Long Island Sound for over 30 years. Our dock neighbor turned out to be head of interventional radiology at Yale. We became dear friends. Of course...something like this happens we turned to him and he referred us to an excellent OC oncologist at Yale/Smilow Cancer Hospital. So, I would get my infusions and drive only 15 mins to get to the marina where it was pretty restful and peaceful.
That is an advantage you will have with your body manufacturing platelets. You should be just fine on the Zejula. My hemoglobin and hematacrit are always low and they were not affected by Zejula. Only my platelets.
XOX
Marisa
PS...is your family from CT?
Yes!
I was raised in Groton, Connecticut in a remarkable home at the mouth of the Thames River, on the Long Island Sound.
We had a small cabin cruiser and us kids had a dinghy to row out to our Island (turns out it wasn’t ours, but no one else claimed it) . We were adventurous and allowed to roam free, boating, clamming, crabbing and avid swimmers.
Sadly, when I was 12 years old, my dad died of a brain tumour and my mother drove us across country to Los Angeles, where we had more family and we were torn away from our beloved life on the water.
We hated LA and as soon as I finished high school, I escaped to San Francisco.
Later, we fled the USA with our daughter, to Scotland and finally settled in Bath.
I have been far from the sea forever, but I have not minded.
I grew up thinking I would die of a brain tumour, but after I lived past my Father’s life span, I forgot all about cancer.
So I was completely stunned to find out I had Ovarian Cancer.
Totally ignorant of it too.
We get a quick course in it though, don’t we.
Knowledge is power and I am all for that.
Nice talking to you!
Hugs,
Laura
Wow. What an amazing story. So sorry you lost your dad so young. I came here from Italy when I was young. We decided to stay here since we were by the shore. We lived on the side of a mountain in southern Italy. Calabria.
The scene you described growing up in on the Sound must be such a sweet memory for you. Many North Easterners close their eyes and can still see and smell the beauty. We raised our son on the Sound just bouncing around from Block Island, Montauk and CT. Our marina was just outside of Saybrook. My son actually had a job with the federal police at Groton. Now he is with the NYPD (bronx!)
Glad you found your home. I always say that in my next life I will be born in Scotland or Ireland. But, what am I saying? I was born in Italy and still came here.lol.
I know your fear of having gotten a brain tumor like your dad. I thought I was going to die of a heart attack the way my mom did, so, I stayed healthy and in shape. Never ever knew about Ovarian Cancer. It was just something I knew women died from. Thank God no more. We are in a good time if there's ever a good time to have this damn disease.
Yes...knowledge is power!
Small world....so happy we met!
Happy Valentine's Day! (another Hallmark holiday to boost US GNP) lol.
XOX
Marisa
I think it is just a question of finding the right drug for your cancer. I revurred during frontline so am platinum refactory but the clinical trial drug kept me stable for a year. Don’t be afraid to get a second opinion to find out what other treatments are out there.
You sound just like me. I was on maintenance Avastin and just had dose 14 out of 18 and it has come back. Absolutely gutted. I foolishly thought I would be protected by being on avastin. So chemo started last week-carbo and caleyx. I so hate this disease and it is dawning on me that it will never ever go.
Pen xxx
I'm so sorry Pen, it's a swine this illness. I am trying to look at it as this is my life now, up's, downs and enjoy what i can on the way. At the moment my stage 4 is incurable so I'm thankful for every day and the sun is shining here in stockport. My heart goes out to you as I unwittingly thought the same, a quite year whilst avastin kept the wolves from the door! Sending you my my best positive thoughts and wishes xxx
Hello Loverosie,
I think Avastin is one of those drugs which either works brilliantly or is a bit of a flop. For me, it was a flop too, so you aren’t alone. I had it with my second line treatment (via medical insurance as not available on the NHS). I finished chemo in the January, continued with Avastin every three weeks and by June the cancer had come back.
You still have lots of treatment options available to you, so don’t be disheartened.
Stupid cancer, indeed.
Vicki x
Thank you Vicki, good to know I'm not the only one and I'm feeling much better about it now. Was a bit of a shocker but i wasn't feeling well at all so in a way I'm quite encouraged as i know why now and that i can feel much better once the treatment starts and the stupid cancer runs for the hills lol! Bless you and i hope you are doing well xxx
Hello,
I am sorry you are in this position. I am too Stage IV. I know I am High Grade Serous. I am Braca Negative. I had debulking surgery on July 11, 2017. I then had 6 rounds of carbo/ Taxol/ Avastin/ immunotherapy/placebo. My CA-125 dropped to 5 in the spring and stayed there until later May. It went to 8, then, 12, then 15.....etc. Before long it was above 35 but I felt fine. They did a cat scan every nine weeks to check on me anyways and all was clear. In Oct I was having some pain in my right side. My CA-125 was now 264, but up until this point I had no symptoms. They ordered a cat scan and found a pleural effusion. In Nov I started carbo/Taxol/ Avastin again. They thought I responded so well to it. They are looking at a different maintenance therapy following chemo.
I was due to have 1 more Avastin treatment before I started back on chemo. It was not what I had hoped but I look how I am doing on treatment.
This has been a very rough year for my husband and I. We lost our son in August which felt worse than any cancer diagnosis. He was our first born. We miss him so much! I am being strong for him as well. My faith carries me through most days.
My doctor is outstanding. I asked him about clinical trials. They currently do not have any at Kettering so he offered to transfer my records to The James in Columbus, Ohio. The responding quickly. This is where I am being seen now. They have many more options at OSU.
So do not be discouraged. It happens. Just find the next best treatment plan for you!
Sending you lots warm thoughts and of love! Peggy xx
Ohh Peggy, my heart felt condolences. I have no idea how you cope with the loss of your son and trying to manage this minefield of a disease. I wish I could offer you some words of comfort but i hope your faith keeps you strong as this illness seems to thrive when we are at our most vulnerable. God bless xxx
Thank you Peggy, i only have one child, a Son, 27 years old and he means the world to me. One blessing from this disease is that we have become closer. Before I was working full time as was he and shift work as I'm a nurse making it difficult to maintain our relationship. Since my diagnosis we have had the time to talk and appreciate each other. I can not imagine life without him. I hope you are coping and that your faith will give you some comfort, i really do feel for you xxx
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